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By Chris Colcord
Fort Wayne Reader
The first thing I did after learning that my daughter was autistic was to ask her, point blank, what 38 x 773 equalled. When she just smiled at me in response I shook my head at my wife and said dismissively, "OH right she's autistic." I then asked my daughter another question regarding probabilities and algorithms and again she didn't have an answer and again I shook my head. And I gave my wife the same look, like: This is ridiculous! My daughter's three, by the way.
The second joke I made was one to myself, when I thought, Great, now I'll have to write a damn book about her or I'll have to create a one-man theatrical piece about the special nature of our father/autistic daughter bond one of those plays with a lone lamp onstage, and some white cubes and convoluted lighting and me stalking the stage and punching the air with my fists every five minutes. Arcade Fire playing in the background. No intermission. The very thought exhausts me, but apparently there's no point in having an autistic kid unless you can get a book or a play or a blog out of the deal to use as a record of your extraordinary journey.
I'm sure a clinician would conclude that my cynicism and poor-taste jokes are obviously coping mechanisms that I'm using to deal with the shock of hearing my daughter's diagnosis. And that eventually I'll quit masking this incredible emotional turmoil that I'm feeling and I'll stop making the jokes and I'll begin the gradual process of accepting my daughter's condition. That I'll come "full circle" on the journey, as it were. That I'll join some groups, seek out support. But I'm afraid that hasn't happened. I'm still making jokes, I don't have much emotional turmoil to mask, the shocking diagnosis wasn't all that shocking, and I'm pretty sure I've accepted my daughter's condition from the very start (those tacky "math" jokes notwithstanding.) And I have no intention of joining any groups or finding more support. To be honest, our lives haven't changed too much since we learned what we had suspected for a while.
What's changed, though, are our reading habits, and I guess that's where a lot of my sardonic detachment comes from. Like a lot of parents with autistic kids, my wife and I have become mini-authorities on autism and we're constantly checking out new studies and publications. There's so much material being produced about autism on a daily basis that it's hard not to get overwhelmed and dizzy trying to keep up. (And it doesn't help that many studies and recently published books are absolutely unreliable and often contradictory.)
But man all the blogs and first-person accounts and memoirs and biographies that are being published constantly. . . I've read a few and some are indeed touching and helpful, but they also make me a tiny bit uncomfortable. It seems everybody with an autistic kid feels compelled to "share their story" somehow, as if the experience is inherently fascinating and uplifting. Please know I'm not going to do any sharing here (you can exhale now) and it's not just because I'm a private person and I like to keep my personal stuff personal. It's more a sense of guilt: I never trust anyone who suddenly becomes a noisy, zealous advocate only because they've been directly affected. It's like, Hey, people were suffering with this before, you know. And I know, I know, sometimes that's what it takes, a personal connection, but I hate thinking that I'm so shallow and lacking in basic altruism and humanity that it takes a conversion to get my attention about something.
And to be really honest, the insane delicacy with language about autistic and special-needs kids has absolutely exhausted me. I've had friends check themselves when I talk about my daughter's diagnosis: when I inform them, they'll say, Wow, that's surprising, she seems so
. And then of course they'll stop, and you can almost see them dragging out the thesaurus in their brain, trying to come up with the appropriately sensitive word. I always jump right in: "She seems so normal? Is that what you want to say?" I assure them that calling or not calling my kid normal is not going to offend me to the high heavens. It does for some parents, I know, but not me. (And by the way, when you make comparisons, you always compare the autistic kid to a "regularly-developing kid" as opposed to a "normal" kid.) I absolutely love the professionals we've dealt with at my daughter's school, and their thoroughness and compassion is so deeply valued, but I'd like to tell them they don't have to be so cautious with us; they can speak frankly without having to couch everything in the safest language possible. We're just not that offendable.
And actually, the rates of autism are so high right now that I'm hoping people will eventually learn to get used to autistic people without making too big a deal about it. Maybe that's impossible naive, but maybe not. I think I'd rather overestimate people's capacity for decency than shortchange them.
I'm going to print a passage from "Neuro Tribes" here, Steven Silberman's 2015 book about the history of autism, for in it an attitude is described that perhaps should be adopted by everyone dealing with autistic people. (For clarity's sake: the passage describes what a college student, Shannon, discovered when she enrolled at the University of Ghana , on African's Gold Coast, in the mid-90s. Shannon gave birth to an autistic son, later in life, and the book follows her story.)
"In a society that values good-natured teasing, Shannon discovered the joys of ribbing without malice. She was ridiculed for speaking only English, while her classmates spoke three or more Ghanian languages. If she aced an exam, her professor would tell her classmates, 'Well, the woman has beat you again.' Even a guy on crutches who had survived a polio epidemic wasn't immune to the abuse: his classmates would say, 'Can't you move along any faster?' (And he would kid them right back.) Shannon was amazed to see disability treated as just a natural part of life, without the usual displays of pity and pompous solemnity."
I swear, I re-read that passage ten times after I saw it. "A natural part of life, without the usual displays of pity and pompous solemnity." The college students told the polio victim on crutches to move it along?! And the guy was cool with that? My God, can you imagine an American doing the same? Impossible to imagine, and yet . . . there's something wonderful about what they did. They don't pretend the guy doesn't exist, and they don't condescend to him. It dawned on me that that's exactly how I want my daughter to be treated.